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Managing eosinophilic asthma for best quality of life
I had allergic asthma starting at age. As an adult it infection induced. At age 68 I developed allergic eosinophilic asthma. 3 years in, with Fasenra and other standard daily meds including Advair, Montelukast, Claritin, and nasal rinse with budesonide, it is now non allergic eosinophilic asthma. Flare ups last about 12 weeks. My main trigger appears to be exposure to a virus or bacterial infection when we are in a group setting outside our normal set of friends, or a GI reflux flare. I have terrible sinus infections with each flare. During my last flare up I lost my hearing in the left ear. While some of it returned, I have loud tinnitus in it much of the time. There is some part of every day that I just don’t feel good - light headed, or a cough, or tightness in my chest, short of breath, or cold, or no voice, or whatever. Have any of you who have this illness found ways to manage for improved quality of life ? My pulmonologist has assured me that I am doing all that I can. Looking for a needle in a haystack! Thanks
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@kathyjjb Glad if this helps you.Many doctors are not aware of some side effects and this site is valuable as we connect our dots together. I have found an old fashioned product which works for my sinus stuffiness. NasalCrom has been on the market for many years. You have to take one spray each nostril every 4-6 hours and not blow your nose for maybe 15 minutes afterwards. It stops Mast cells from putting out histamines. It is mon steroidal and can be used with other allergy meds if needed. You have to keep it up for it to work but I have found definite benefit! Just keep it in your purse so you have it handy. Maybe keep a second one on the nightstand to remember each morning and night. Also do not use the generic form of azelastine sodium which is over the counter Astepro antihistamine. It has something in it which can make sinusitis worse! Stick to the azelastine sodium if taking an antihistamine nasal spray. We live with these health issues and if we are lucky we learn and pass those ideas on to others.
Keep learning!
MYH13
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1 Reaction@mth13 I don't have any nasal issues-at all. Knock on wood!! It's my lungs that have chronic inflammation and histamines Also, antihistamines don't work on me. It's all so bizarre. I remember years ago when I was patient of Dr Ellis at NJH, he diagnosed me with reactive airway disease and told me that allergy shots would not work on me since my breathing problems are not due to histamines. We are all so different. Having a combination of asthma, bronchiectasis, and reactive airways is like being on a seesaw. Throw in the M. Abscessus (watch in wait) is horrible.
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1 ReactionThat is what Pulmologist said.
Fasenra was the key for me. I have Alpha-1 Antitrypsin which caused me to develop emphysema. Since I am now in a clinical trial I had to quit Fasenra. I also have terrible sinus issues. The way I manage it is first with a triple ingredient nasal spray compounded at Mayo’s pharmacy. I keep my allergies under control by adding Xyzol nightly to daily Zyrtec during allergy season. My daughter also has Alpha-1 and our pulmonologist at Mayo put her on Dupixent to prevent infections. She didn’t have to go on antibiotics once last year and the two infections she got cleared up quickly before becoming bacterial. I highly recommend Dupixent.
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1 Reaction@marciaalongworth I have allergic eosinophilic asthma. I also get sinus infection involvement that moves down to my chest. When that happens and my lungs start building phlegm that I'm not clearing, I know it's time to treat this. I have antibiotic ointment Mupiroicin (generic for Bactroban) that I use in my nostrils at night for a few days. That cleans up the infection, and I will be clearing phlegm after using it. My dentist also recommends a particular type of coffee as a daily way to combat chest infections. I haven't tried that yet.
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1 Reaction@jenniferhunter
Interesting. I have Mupiroicin here at home. I'll try that. The sinus infection is what does me in. Thank you!
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1 Reaction@marciaalongworth This was something my Mayo surgeon requested before surgery to proactively prevent a post surgical infection. I was to place a pea sized glob in each nostril twice a day. I can't remember if it was for 10 days. It tends to want to run out, so now I just do this when going to bed so I can lay down and I treat for a day past when my symptoms are gone. I have found that if there is an infection present, it may burn a little bit, but when the infection is gone, it does not when applying. I had tried this and it worked. I then discussed it with my primary care doctor and was given a prescription so I can use this when I need it. I notice that my allergy treatments are not as effective, and my resting heart rate goes up a little bit because of trapped phlegm. I am using a generic Mucinex and allergy/asthma medication.
@orangetiger let me clear up my answer to you. What the Pulmologist actually said after reviewing the CT was “reversible collapse of the tiny air sacs in left lung”.
@jenniferhunter This is great advice. I have this med from post sinus surgery so I will get more and try it. Is it like an oral antibiotic where you do it ten days and stop to prevent antibiotic resistance?
@orangetiger What the pulmonologist was referring to was probably a condition called atelectasis, collapse of multiple alveoli usually caused by infection or persistent airway inflammation.
You can read about it here:
https://share.google/olr0zhrqRsOmqiVfr